Today, I am remembering Halloween 5 years ago. It was the saddest time of my life.
My brother had been diagnosed with MS in 1998. During the times that his disease would flare, treatment options were incredibly expensive and I think that ultimately, he tried to suffer through the worst of it, until it got too bad.
From approximately 2007 through 2009, Donald had a regular doctor (primary care physician) at a local medical center, however he had never met, nor ever saw his physician He was only seen and treated by physician assistants. He was referred to Fletcher Allen for treatment for MS.
Donnie last worked at a local granite tile company. His job title was "granite polisher" and he occasionally went out of shop to set tile on various jobs (installing counter tops, etc. in people's homes). His last day of employment was 8/21/09 (and he was having problems w/ his vision, hand shaking, and the onset of what he thought was pain relating to MS on his left side and headaches) but did not seek medical help for a couple of weeks, thinking that the symptoms would subside.
On or about September 10, 2009, Donnie went to Fletcher Allen where he was prescribed IV therapy at Central Vermont Hospital for treatment of MS. He received 5 days of IV drips from September 14 through 19th, 2009. Donald had lost his medical insurance through his employment (which includes coverage for daughter) on September 1st. After treatment, his symptoms did not improve, in fact they worsened. Slowly and surely.
On Friday, October 23, 2009, I took Donnie to the Neurology Department at Fletcher Allen Hospital for his scheduled appointment for a check up regarding his current symptoms which were on-going headaches and difficulty walking. Again, he met with a PA, not a doctor. During the course of the interview, Donnie indicated that he had quit smoking, and had laid off the coffee for approximately 5 weeks. The nurse said that his headaches were the result of caffeine withdrawal, and that his leg / hip tenderness was most likely MS related symptoms.
I tried to explain that there was much more than headaches and pain with walking, but his memory, speech and motor skills were dulled and slow. Something was far worse than caffeine withdrawal. My comments were dismissed and ignored. To date, [at that time] X-Rays, CT SCAN or MRI tests were not ordered or conducted. She did write a prescription for a generic medication to treat depression (Amitriptylin 25 mg - oral - 1 at bedtime for 1 week, to increase to 2 tabs daily after 1 week). Donnie refers to this med as "happy pills" - I paid for them. She also prescribed Ibuprofen (800 mg every 6 hours to decrease pain and inflammation of left side - ankle to above hip/lower back).
To back up a bit, I should explain that Donnie had returned to live at my parents house in the Spring of 2009, as he had filed for Divorce. At the end of September, I had a huge job offer fall through (co-ownership of an Inn in Bridgewater) - I had given notice at my job, found new renters for my apartment in Montpelier, packed the moving truck, and as I was loading the last piece of furniture (my new futon) onto the truck, I received a phone call from my potential employer indicating he had gone broke, and was selling his business. He had no employment for me! I had no where to go, so I called my parents, who welcomed me back home - primarily to watch over Donnie. To me, this was an example of God guiding me to where I was needed, as my parents were elderly and at a total loss as to what to do for their son and his symptoms. I think they were frightened and beyond concerned. So, I moved in, and began to care for my brother, conduct a new job search, and help my parents where ever possible.
Again, thank God I was there, as what ensued from the 23rd through October 31st, 2009 was Donald's steady decline of cognitive and motor skills. Pain, confusion and difficulty walking increased.
On Friday night, the 30th, my niece had come to spend the night. She had fallen asleep, and I heard my brother call to me from his room. I entered, and Donnie was half-sitting/half-laying against the bed on the floor. I sat down next to him. He had his wallet in his hand, and he was searching for something that wasn't there. He pulled everything out of it, and then put it back again. This was repeated a few times. Then he began to search his jean pockets - at which point he had pulled out his car keys, and I said to him, "There are your keys!" and that seemed to put his mind to rest. I remembered we laughed and behind the laughter, I was crying - trying desperately not to let the tears spill out of my eyes - so that he did not see my worry and concern. I helped him into bed as his legs seemed to had given out. He almost immediately fell asleep.
Early the next morning, (Halloween) my niece was up and downstairs with my parents. I came down to get my morning cup of coffee, when I heard my brother call to me from upstairs. "Denise!" (It should be noted that Donnie only used my real name when he wanted my attention, or if he had something important to tell me. He always called me either "Dennis" or "Nanette"). As I headed up the stairs, I was pretty sure that I would find a similar situation as to the night before, which I did, only this time he was sprawled across his bed, wearing only a t-shirt and underwear, unable to sit up. I pulled him forward, and helped him to put on a pair of sweats. I told him to just wait right there. I thought quick, and told him I was going to get his daughter home, and then come back to help him. I ran downstairs and called her Mother to come pick her, because I did not want my niece to see her Dad in the state that he was in. I remained calm and told her to get her things together, I had to take Daddy to the doctor to get checked. She was around 10 or 11 at that time, and I felt that it may be traumatic to her. Thankfully, her Mom came right away. It was 8 a.m.
While my niece's Mom was en route (just a couple of miles away), I returned upstairs and helped Donnie into a pair of socks and a sweat shirt. It was about 6 to 9 paces from Donald's room to the top of the stairs. From there, it is 14 steps down, with a landing in the middle. With support, we walked to the top of the landing and then he had to sit down and move from one step down to the next, with my help. About 1/2 way down, he asked me to "take the pot" out of his hand, extending his arms as if he was holding something. Asked, "What pot?" at which point he became annoyed and briskly said, shaking his arms, "The pot!". I pretended to take it away and told him I was setting it down. This seemed to have calm him down, and we agonizingly proceeded to descend the rest of the way down the stairs. At 8:35 a.m., I had got him to the bottom.
During this time, my poor parents were in the kitchen, worried sick watching all of this, not really knowing what to do or say. Mom asked if we should call the ambulance, and I said no, I was bringing him to Fletcher, where there was a neurology department. I ran outside and moved my car onto the lawn in front of the porch steps to lessen the distance from the house to my car, and ran in to call Fletcher Allen Emergency Room. I got through to the Doctor on call and stated that I was bringing my little brother to the Emergency Room, he was a neurology patient there and was being treated for MS. He was having symptoms similar to someone having a stroke. Incredibly - and I mean incredibly, the doctor told me to bring my brother to the Central Vermont Medical Center because he probably had a urinary track infection! As you can imagine, I lost it - telling that doctor that NO, I wasn't bringing him to CVMC - I was bringing him to Fletcher Allen - he can't walk, he is confused - something is terribly wrong and that he could expect me there as fast as I could get there! I'd like to add that there were some colorful superlatives thrown in, but I will spare the reader.
I proceeded to get Donald into the car, and we sped to Burlington, leaving Williamstown by approximately 9:40 a.m. This 45 minute trip, took about 35 minutes. Once there, I parked at the ER entrance, and was immediately met at the door with a wheelchair and Donald didn't have to wait even a minute before he was admitted and they whisked him away to get a CT-SCAN. FINALLY! Initial tests were not good. They located lesions around his brain, and fractures along his hip. They then proceeded to take him in for an MRI which showed conclusively that he had lung cancer which had metastasized to his brain and bones. I stayed with him until about 6:30 p.m. Our family met with the doctors the following day to discuss his diagnosis and options. My sister and brother-in-law seemed to have the best handle on his diagnosis and treatment options. Having been through this, they could explain the situation with less medical terminology, and for that, we were grateful.
I returned every day for the next 5 days and would stay for hours to visit. I was unemployed and wanted to be there. Donald under-went tests of all kinds - to include being treated with "nuclear medicine". He was given fluids and medication, and he seemed to return to his old self, even getting his appetite back (constantly exploring his menu options). After treatment to stabilize him, he was released on the evening of November 5th. He looked good, as if his health had returned. We returned home and on Friday, November 6th (following doctor's orders) we began to set up further treatments of chemotherapy and radiation therapy for early the following week. I took him to Walmart, and he used the motorized cart to pick up his medications. Typically, we got the giggles and he continued to run into me with his cart on purpose. He would go forward to hit me, and then find me again, and use reverse to run into me. We laughed.
That afternoon, my sister and her husband came to my parents house. She brought Donnie's favorite grinders to eat. As we sat around the kitchen table, we continued to encourage him that his diagnosis was treatable, and that he had to keep going. He tried to muster the courage to believe us, but ultimately fell to despair and wept. He was afraid. We all were afraid. Among our own tears, we kept on with our mantras that he would get better. My sister returned home with the plans of returning early the next week to be at his appointments.
The next morning is still surreal in my mind. Donnie came down stairs and said he felt weird. I told him I would make him a cup of tea, and I poured him a bath to relax. He had a few sips of tea and then went into to relax in the bath. About 15 minutes later, he came out and said, "You had better call CVH", and went into the living room to sit in "his" chair. All I can remember is I ran outside, pulled my car onto the lawn in front of the door.
I ran inside, and my mother squeaked in a high pitch, frantic voice, "He's in shock!" I yelled to my parents to call 9-1-1 and they stood there, frozen. I picked up the phone and dialed. I started to give details, and handed the phone to my parents, and ran into the living room to try to give my brother CPR. He was gone. I knew he was gone, but I tried. The ambulance came and began life saving measures, and as they loaded him onto the gurney, I knew that was the last time I would see him. Tearfully and hoarse, I yelled, "Fight, Donnie, Fight!" But, he had lost the battle and they took him away.
After he passed away, our family was in the living room remembering his youth. He was slight, with blonde hair and big brown eyes and an infectious laugh. He seemed to always be tanned, and we remembered him playing with trucks or his little Army men. My father wrote a poem in remembrance of him, which captured all of our thoughts:
My brother had been diagnosed with MS in 1998. During the times that his disease would flare, treatment options were incredibly expensive and I think that ultimately, he tried to suffer through the worst of it, until it got too bad.
From approximately 2007 through 2009, Donald had a regular doctor (primary care physician) at a local medical center, however he had never met, nor ever saw his physician He was only seen and treated by physician assistants. He was referred to Fletcher Allen for treatment for MS.
Donnie last worked at a local granite tile company. His job title was "granite polisher" and he occasionally went out of shop to set tile on various jobs (installing counter tops, etc. in people's homes). His last day of employment was 8/21/09 (and he was having problems w/ his vision, hand shaking, and the onset of what he thought was pain relating to MS on his left side and headaches) but did not seek medical help for a couple of weeks, thinking that the symptoms would subside.
On or about September 10, 2009, Donnie went to Fletcher Allen where he was prescribed IV therapy at Central Vermont Hospital for treatment of MS. He received 5 days of IV drips from September 14 through 19th, 2009. Donald had lost his medical insurance through his employment (which includes coverage for daughter) on September 1st. After treatment, his symptoms did not improve, in fact they worsened. Slowly and surely.
On Friday, October 23, 2009, I took Donnie to the Neurology Department at Fletcher Allen Hospital for his scheduled appointment for a check up regarding his current symptoms which were on-going headaches and difficulty walking. Again, he met with a PA, not a doctor. During the course of the interview, Donnie indicated that he had quit smoking, and had laid off the coffee for approximately 5 weeks. The nurse said that his headaches were the result of caffeine withdrawal, and that his leg / hip tenderness was most likely MS related symptoms.
I tried to explain that there was much more than headaches and pain with walking, but his memory, speech and motor skills were dulled and slow. Something was far worse than caffeine withdrawal. My comments were dismissed and ignored. To date, [at that time] X-Rays, CT SCAN or MRI tests were not ordered or conducted. She did write a prescription for a generic medication to treat depression (Amitriptylin 25 mg - oral - 1 at bedtime for 1 week, to increase to 2 tabs daily after 1 week). Donnie refers to this med as "happy pills" - I paid for them. She also prescribed Ibuprofen (800 mg every 6 hours to decrease pain and inflammation of left side - ankle to above hip/lower back).
To back up a bit, I should explain that Donnie had returned to live at my parents house in the Spring of 2009, as he had filed for Divorce. At the end of September, I had a huge job offer fall through (co-ownership of an Inn in Bridgewater) - I had given notice at my job, found new renters for my apartment in Montpelier, packed the moving truck, and as I was loading the last piece of furniture (my new futon) onto the truck, I received a phone call from my potential employer indicating he had gone broke, and was selling his business. He had no employment for me! I had no where to go, so I called my parents, who welcomed me back home - primarily to watch over Donnie. To me, this was an example of God guiding me to where I was needed, as my parents were elderly and at a total loss as to what to do for their son and his symptoms. I think they were frightened and beyond concerned. So, I moved in, and began to care for my brother, conduct a new job search, and help my parents where ever possible.
Again, thank God I was there, as what ensued from the 23rd through October 31st, 2009 was Donald's steady decline of cognitive and motor skills. Pain, confusion and difficulty walking increased.
On Friday night, the 30th, my niece had come to spend the night. She had fallen asleep, and I heard my brother call to me from his room. I entered, and Donnie was half-sitting/half-laying against the bed on the floor. I sat down next to him. He had his wallet in his hand, and he was searching for something that wasn't there. He pulled everything out of it, and then put it back again. This was repeated a few times. Then he began to search his jean pockets - at which point he had pulled out his car keys, and I said to him, "There are your keys!" and that seemed to put his mind to rest. I remembered we laughed and behind the laughter, I was crying - trying desperately not to let the tears spill out of my eyes - so that he did not see my worry and concern. I helped him into bed as his legs seemed to had given out. He almost immediately fell asleep.
Early the next morning, (Halloween) my niece was up and downstairs with my parents. I came down to get my morning cup of coffee, when I heard my brother call to me from upstairs. "Denise!" (It should be noted that Donnie only used my real name when he wanted my attention, or if he had something important to tell me. He always called me either "Dennis" or "Nanette"). As I headed up the stairs, I was pretty sure that I would find a similar situation as to the night before, which I did, only this time he was sprawled across his bed, wearing only a t-shirt and underwear, unable to sit up. I pulled him forward, and helped him to put on a pair of sweats. I told him to just wait right there. I thought quick, and told him I was going to get his daughter home, and then come back to help him. I ran downstairs and called her Mother to come pick her, because I did not want my niece to see her Dad in the state that he was in. I remained calm and told her to get her things together, I had to take Daddy to the doctor to get checked. She was around 10 or 11 at that time, and I felt that it may be traumatic to her. Thankfully, her Mom came right away. It was 8 a.m.
While my niece's Mom was en route (just a couple of miles away), I returned upstairs and helped Donnie into a pair of socks and a sweat shirt. It was about 6 to 9 paces from Donald's room to the top of the stairs. From there, it is 14 steps down, with a landing in the middle. With support, we walked to the top of the landing and then he had to sit down and move from one step down to the next, with my help. About 1/2 way down, he asked me to "take the pot" out of his hand, extending his arms as if he was holding something. Asked, "What pot?" at which point he became annoyed and briskly said, shaking his arms, "The pot!". I pretended to take it away and told him I was setting it down. This seemed to have calm him down, and we agonizingly proceeded to descend the rest of the way down the stairs. At 8:35 a.m., I had got him to the bottom.
During this time, my poor parents were in the kitchen, worried sick watching all of this, not really knowing what to do or say. Mom asked if we should call the ambulance, and I said no, I was bringing him to Fletcher, where there was a neurology department. I ran outside and moved my car onto the lawn in front of the porch steps to lessen the distance from the house to my car, and ran in to call Fletcher Allen Emergency Room. I got through to the Doctor on call and stated that I was bringing my little brother to the Emergency Room, he was a neurology patient there and was being treated for MS. He was having symptoms similar to someone having a stroke. Incredibly - and I mean incredibly, the doctor told me to bring my brother to the Central Vermont Medical Center because he probably had a urinary track infection! As you can imagine, I lost it - telling that doctor that NO, I wasn't bringing him to CVMC - I was bringing him to Fletcher Allen - he can't walk, he is confused - something is terribly wrong and that he could expect me there as fast as I could get there! I'd like to add that there were some colorful superlatives thrown in, but I will spare the reader.
I proceeded to get Donald into the car, and we sped to Burlington, leaving Williamstown by approximately 9:40 a.m. This 45 minute trip, took about 35 minutes. Once there, I parked at the ER entrance, and was immediately met at the door with a wheelchair and Donald didn't have to wait even a minute before he was admitted and they whisked him away to get a CT-SCAN. FINALLY! Initial tests were not good. They located lesions around his brain, and fractures along his hip. They then proceeded to take him in for an MRI which showed conclusively that he had lung cancer which had metastasized to his brain and bones. I stayed with him until about 6:30 p.m. Our family met with the doctors the following day to discuss his diagnosis and options. My sister and brother-in-law seemed to have the best handle on his diagnosis and treatment options. Having been through this, they could explain the situation with less medical terminology, and for that, we were grateful.
I returned every day for the next 5 days and would stay for hours to visit. I was unemployed and wanted to be there. Donald under-went tests of all kinds - to include being treated with "nuclear medicine". He was given fluids and medication, and he seemed to return to his old self, even getting his appetite back (constantly exploring his menu options). After treatment to stabilize him, he was released on the evening of November 5th. He looked good, as if his health had returned. We returned home and on Friday, November 6th (following doctor's orders) we began to set up further treatments of chemotherapy and radiation therapy for early the following week. I took him to Walmart, and he used the motorized cart to pick up his medications. Typically, we got the giggles and he continued to run into me with his cart on purpose. He would go forward to hit me, and then find me again, and use reverse to run into me. We laughed.
That afternoon, my sister and her husband came to my parents house. She brought Donnie's favorite grinders to eat. As we sat around the kitchen table, we continued to encourage him that his diagnosis was treatable, and that he had to keep going. He tried to muster the courage to believe us, but ultimately fell to despair and wept. He was afraid. We all were afraid. Among our own tears, we kept on with our mantras that he would get better. My sister returned home with the plans of returning early the next week to be at his appointments.
The next morning is still surreal in my mind. Donnie came down stairs and said he felt weird. I told him I would make him a cup of tea, and I poured him a bath to relax. He had a few sips of tea and then went into to relax in the bath. About 15 minutes later, he came out and said, "You had better call CVH", and went into the living room to sit in "his" chair. All I can remember is I ran outside, pulled my car onto the lawn in front of the door.
I ran inside, and my mother squeaked in a high pitch, frantic voice, "He's in shock!" I yelled to my parents to call 9-1-1 and they stood there, frozen. I picked up the phone and dialed. I started to give details, and handed the phone to my parents, and ran into the living room to try to give my brother CPR. He was gone. I knew he was gone, but I tried. The ambulance came and began life saving measures, and as they loaded him onto the gurney, I knew that was the last time I would see him. Tearfully and hoarse, I yelled, "Fight, Donnie, Fight!" But, he had lost the battle and they took him away.
After he passed away, our family was in the living room remembering his youth. He was slight, with blonde hair and big brown eyes and an infectious laugh. He seemed to always be tanned, and we remembered him playing with trucks or his little Army men. My father wrote a poem in remembrance of him, which captured all of our thoughts:
RUN TO THE SUN
Run to the sun o’ little one,
and in it’s magic rays
grown strong as one who’s having fun
Beginning all his days.
Run, run little legs of one
in suit of brown and blue
with hair bleached by shining sun
and little body of golden hue.
Run, run grown man you've become
In God’s eyes and warming light
Fusing with the rays of the sun
A fire of youth before the night.
Run, run, to the sun little one…
by "Dad", Gerald A. Hinckley [RIP]
In Memory of Donnie
Donnie was cremated. He is buried in the Williamstown (VT) Village Cemetery. June 8, 1968 ~ November 7, 2009
~Brother, We Miss Thee~
~Brother, We Miss Thee~
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